Had an enjoyable Italian meal out last night, then went for a walk along the sea front. Len took this great mood picture from the beach.....pity the lanky twat in the brown trousers got in the way...oh yeh, that's me!!
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Sunday 29 July 2012
Eastbourne
Just returned from.....wait for it....wait for it....a night out in Eastbourne (you don't have to feel bad for me). Dropped Marcus and a friend off at at nearby multi activity centre for a week of canoeing, raft building, climbing, BMXing and everything else you could imagine, then stayed on in Eastbourne to 'mix it up' with the old folk and enjoy a bit Frank Sinatra.
Had an enjoyable Italian meal out last night, then went for a walk along the sea front. Len took this great mood picture from the beach.....pity the lanky twat in the brown trousers got in the way...oh yeh, that's me!!
After a night of listening to seagulls and a full English breakfast thrown in for goo measure, we played the tourists and experienced the delights of the pier (how that thing's still standing I do not know), then drove up to Beachy Head. Weather held up well, knees a little swollen, but now back home watching the Olympics and ready for tomorrow.
Had an enjoyable Italian meal out last night, then went for a walk along the sea front. Len took this great mood picture from the beach.....pity the lanky twat in the brown trousers got in the way...oh yeh, that's me!!
Thursday 26 July 2012
Kyprolis
Good news on the paraprotein front today. The count at the end of cycle two was 14 g/l, down from the previous level of 17 g/l at the end of cycle one, so all positive and heading in the right direction.
Len receives e-mails from Myeloma UK, and whilst we were up at the hospital she received one regarding a new drug, Carfilzomib (Kyprolis - you just couldn't make these names up!!), which has just been granted licensing and marketing approval by the US Food and Drug Administration (FDA) for the treatment of relapsed and refractory myeloma patients. Results from Phase II clinical studies indicated that Carfilzomib is more effective than Velcade, and associated with less severe side-effects, especially peripheral neuropathy.
It's really encouraging to see that, even for these rare forms of cancer, research continues and new treatments are becoming available. No doubt there is still some way to go before its approval for use in the UK, but we're not talking about ten years from now and I'm sure there will be significant developments with not only this drug, but others, over the next few years. What's most important however, is that this postive news gives me just another helping hand along my journey.
With all this ongoing research and new treatments becoming available, I've got to keep believing that the future looks bright and who knows, maybe one day, myeloma will be seen more as a chronic disease. Maybe....but it's good enough for me!!
....and with a night like this, it felt almost rude not to pop down for a quick shandy by the river. Just been out with a close friend for a good catch up on all that's been happening in both of our lives.....really good night! Now back at home and looking forward to a good nights sleep...until 2:30am when I'll probably be tapping Len on the shoulder and asking nurse for a cup of tea. Now would I do that??
http://www.myeloma.org.uk/about-muk/news/myeloma-news/carfilzomib-kyprolis-approved-by-fda-for-use-in-the-united-state/#.UBEN4K_Okmw.facebook
Len receives e-mails from Myeloma UK, and whilst we were up at the hospital she received one regarding a new drug, Carfilzomib (Kyprolis - you just couldn't make these names up!!), which has just been granted licensing and marketing approval by the US Food and Drug Administration (FDA) for the treatment of relapsed and refractory myeloma patients. Results from Phase II clinical studies indicated that Carfilzomib is more effective than Velcade, and associated with less severe side-effects, especially peripheral neuropathy.
It's really encouraging to see that, even for these rare forms of cancer, research continues and new treatments are becoming available. No doubt there is still some way to go before its approval for use in the UK, but we're not talking about ten years from now and I'm sure there will be significant developments with not only this drug, but others, over the next few years. What's most important however, is that this postive news gives me just another helping hand along my journey.
With all this ongoing research and new treatments becoming available, I've got to keep believing that the future looks bright and who knows, maybe one day, myeloma will be seen more as a chronic disease. Maybe....but it's good enough for me!!
....and with a night like this, it felt almost rude not to pop down for a quick shandy by the river. Just been out with a close friend for a good catch up on all that's been happening in both of our lives.....really good night! Now back at home and looking forward to a good nights sleep...until 2:30am when I'll probably be tapping Len on the shoulder and asking nurse for a cup of tea. Now would I do that??
http://www.myeloma.org.uk/about-muk/news/myeloma-news/carfilzomib-kyprolis-approved-by-fda-for-use-in-the-united-state/#.UBEN4K_Okmw.facebook
Monday 23 July 2012
San Miguel
Never has a pint of San Miguel tasted so good. It’s been
a stable end to my rest week, and with Marcus at a sleep over on Saturday
night, we decided to go out for a meal. Remembering having read in a medical
journal somewhere that vodka enhances the effect of the chemo (bit like the
steroids), we indulged in a cheeky vanilla vodka, ‘Absolut’ of course, as an
hors d’oeuvre. Noting that the restaurant served San Miguel on tap as we walked
in, surely it would have been considered rude not to place an order before we
ate. Food was a lot better than expected and it was fantastic for the two of us
just get out, chill, and have a good chat about non cancer stuff.
Up at the hospital now for the start of cycle 3 and
having had a few good sleep nights, I feel rested and as prepared as I can be. They’ve
taken my blood, which they do prior to every Velcade injection, but this time
they’ll also be checking my paraprotein level again. Will get the results on
Thursday…….I’m sure you can’t wait!!
Thursday 19 July 2012
Bike ride
Our baby has all grown up.......final day for Marcus at primary school. He had a fun last day following his body popping dance routine on centre stage at yesterdays year 6 leavers disco. Secondary school and teens next.......not long and he'll stop talking to us all together!!
A positive visit to the consultant this afternoon. He's happy with the progress made so far and the way I have reacted to the chemo. He even made the comment 'so where's the tumour then....everything looks normal'.
And the icing on the cake, finally an evening without rain. Just returned from a bike ride around Richmond Park. Really nice to get out.
A positive visit to the consultant this afternoon. He's happy with the progress made so far and the way I have reacted to the chemo. He even made the comment 'so where's the tumour then....everything looks normal'.
And the icing on the cake, finally an evening without rain. Just returned from a bike ride around Richmond Park. Really nice to get out.
Wednesday 18 July 2012
Tongue
It was good fun to have some relatives over for the weekend. They're so easy going, so I could just relax and chill without having to think of things to do. Seemed like we spent most of the time trying to work out whether we're first cousin once removed, or second cousins or whether something else was meant to be removed. Maybe that's why I was numb.....nothing to do with the drugs!! Parents also popped over on the Sunday before flying out to Sweden to stay with my brother.
It turned out to be a low energy weekend, with the post steriod drop off feeling of numbness and fatigue really taking over from Saturday evening. It's difficult to describe the numbness, but it's a sensation of being 'detached' or just out of focus. It's also clear that with tiredness comes emotion and it appears from seemingly nowhere. I started to cry when the Velcade was going in last Thursday....I don't know what triggered it, I wasn't worked up beforehand, I wasn't feeling particularly sad or thoughtful.....it just happened. I had very little sleep the night before, and I suppose things just all add up on occasions. You start to question the situation a bit more, the prognosis and what lies ahead. The same happened on a few occasions over the weekend. The lack of sleep certainly catches up with you. Len and I are starting to really appreciate our regular 3:30am rendezvous......that sounds quite exciting and way too raunchy.......I mean a cup of tea and a read! You know you're in trouble when you've read two articles on how the banks set Libor and you're still not feeling drowsy!!
I've also decided to withdraw my application from the '2012 Beautiful Tongue Awards'. Having become aware that all drinks had started to taste like seawater, I thought I'd do a brief tongue inspection. You'll be please to know that the white shagpile rug I found that had replaced my tongue is now under control (with the aid of some prescribed medicine) and things are returning to normal.......and there I was thinking that steriods gave you a hairy back!! Very naive.
I've got an appointment with my consultant tomorrow afternoon. Not expecting anything other than a routine check up, but will probably ask a bit more about future bone marrow biopsies.
It turned out to be a low energy weekend, with the post steriod drop off feeling of numbness and fatigue really taking over from Saturday evening. It's difficult to describe the numbness, but it's a sensation of being 'detached' or just out of focus. It's also clear that with tiredness comes emotion and it appears from seemingly nowhere. I started to cry when the Velcade was going in last Thursday....I don't know what triggered it, I wasn't worked up beforehand, I wasn't feeling particularly sad or thoughtful.....it just happened. I had very little sleep the night before, and I suppose things just all add up on occasions. You start to question the situation a bit more, the prognosis and what lies ahead. The same happened on a few occasions over the weekend. The lack of sleep certainly catches up with you. Len and I are starting to really appreciate our regular 3:30am rendezvous......that sounds quite exciting and way too raunchy.......I mean a cup of tea and a read! You know you're in trouble when you've read two articles on how the banks set Libor and you're still not feeling drowsy!!
I've also decided to withdraw my application from the '2012 Beautiful Tongue Awards'. Having become aware that all drinks had started to taste like seawater, I thought I'd do a brief tongue inspection. You'll be please to know that the white shagpile rug I found that had replaced my tongue is now under control (with the aid of some prescribed medicine) and things are returning to normal.......and there I was thinking that steriods gave you a hairy back!! Very naive.
I've got an appointment with my consultant tomorrow afternoon. Not expecting anything other than a routine check up, but will probably ask a bit more about future bone marrow biopsies.
Sunday 15 July 2012
Olympic Flame
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| The nearest I'll get to Olympic glory this year...... or any other year for that matter!! |
Tuesday 10 July 2012
Monday 9 July 2012
Paraprotein
I’m sitting here, hooked up to my second dose of Zometa (the
bone strengthening drug which I will take every four weeks for the next two
years) thinking ‘it’s been six days since my last post’. Why…well, in truth, I
really haven’t felt like writing anything over the last few days. Funny really,
because the results I got last Thursday were a real cause for celebration. The
blood tests taken just before the start of my second cycle of chemo showed that
my paraprotein level had dropped from 21 g/l to 17 g/l. This is another strong indication
that the treatment is working!!
Anyway, back to why I haven’t been in the mood to post a blog for the last few days. I’ve had a real lack of energy, partly due to an on-going cold, and certainly not helped by my broken sleep. It’s turned into a bit of a running battle for me. My brain on the one side, trying to convince me that I’m OK to carry on with my normal routines, and my body on the other, telling me to stop and listen. I’m frustrated by this standoff at the moment, but as everyone says, I need to listen to what my body is saying. I need to make that adjustment, to accept that this treatment will weaken me. It’s difficult, because I just want everything back to normal, back to the way it was. The feeling of numbness that I’ve previously experienced really took over, and in hindsight I probably wasted energy trying to fight it. No one said this was going to be easy, and hopefully this weekend has been a lesson for me……just listen to your body! Either that or stop complaining and just get out there a cut the bloody lawn!!
Len and I often talk about these kinds of issues. We learn a lot from each other (though mainly her off me obviously!!), but when it comes to these more ‘behavioural’ issues and techniques, Len takes the lead and is clearly the more informed member of our family. She re-emphasised that, if myeloma is what we’ve got to deal with, how grateful we should be that the tumour on my sternum exposed this disease so early. How fortunate I was to have the trauma in the summer of 2010 (sounds more convincing than ‘mishap on a water slide’…) that seemingly weakened the bone and allowed this otherwise hidden disease to surface. Most people are not so lucky, and many do not even discover they are sick until their kidneys are no longer functioning. As I’ve said before, considering I have multiple myeloma, and how it could have continued to attack my body and destroy my plasma cells for many more years, I’m in a good place.
A few people have asked about paraprotein levels (for the
Swedes amongst you, that’s ‘M-komponenten’), so here’s a simple explanation
from the Myeloma UK website. Myeloma is a type of cancer arising from plasma
cells which are found in the bone marrow. These plasma cells form part of your
immune system. Normal plasma cells produce antibodies that help fight infection.
In myeloma, malignant plasma cells in the bone marrow produce large amounts of
an abnormal antibody known as paraprotein. Unlike normal antibodies,
paraprotein lacks the capacity to fight infection and has no useful function (apart
from giving you the looks of Quasimodo!!). It is often through the measurement
of this paraprotein that myeloma is diagnosed and monitored.
From what I currently understand, the ideal is for this count
to reduce to zero, at which point you’d to be considered to be in complete
remission. Again, myeloma is such an individual disease, so there’s nothing
exact about these values, and as far as I know you can have a paraprotein count
of 2 to 3, and still be considered in remission. That’s something I will understand
more about in the future, but for the time being, I’m responding to the
treatment and things are heading in the right direction. I’m counting my
blessings. Anyway, back to why I haven’t been in the mood to post a blog for the last few days. I’ve had a real lack of energy, partly due to an on-going cold, and certainly not helped by my broken sleep. It’s turned into a bit of a running battle for me. My brain on the one side, trying to convince me that I’m OK to carry on with my normal routines, and my body on the other, telling me to stop and listen. I’m frustrated by this standoff at the moment, but as everyone says, I need to listen to what my body is saying. I need to make that adjustment, to accept that this treatment will weaken me. It’s difficult, because I just want everything back to normal, back to the way it was. The feeling of numbness that I’ve previously experienced really took over, and in hindsight I probably wasted energy trying to fight it. No one said this was going to be easy, and hopefully this weekend has been a lesson for me……just listen to your body! Either that or stop complaining and just get out there a cut the bloody lawn!!
Len and I often talk about these kinds of issues. We learn a lot from each other (though mainly her off me obviously!!), but when it comes to these more ‘behavioural’ issues and techniques, Len takes the lead and is clearly the more informed member of our family. She re-emphasised that, if myeloma is what we’ve got to deal with, how grateful we should be that the tumour on my sternum exposed this disease so early. How fortunate I was to have the trauma in the summer of 2010 (sounds more convincing than ‘mishap on a water slide’…) that seemingly weakened the bone and allowed this otherwise hidden disease to surface. Most people are not so lucky, and many do not even discover they are sick until their kidneys are no longer functioning. As I’ve said before, considering I have multiple myeloma, and how it could have continued to attack my body and destroy my plasma cells for many more years, I’m in a good place.
Tuesday 3 July 2012
Eye Update
Having had this snap shot taken as I left A&E on Sunday, you'll be pleased to know that my left eye has returned to pretty much normal!
I've also been thinking. Following my trip to Goodwood on Saturday, if I can get myself another 999,943 followers for the blog, push out a few more sob, sob stories, then convince everyone to contribute £1 each towards my suffering, I could treat myself to a Koenigsegg Agera R at the end of all this. Not that I'm materialistic, obviously good health is far more important.....it does look good though!!
Just a brief update on the side effects at the start of cycle 2. I've already noticed a repeat of cycle 1, with my sleep pattern broken up due to the steriods and my gastric reflux kicking off again. If it remains aligned to cycle 1, both should improve over the next few days. I still remain aware of the peripheral neuropathy, but so far so good.
I've also been thinking. Following my trip to Goodwood on Saturday, if I can get myself another 999,943 followers for the blog, push out a few more sob, sob stories, then convince everyone to contribute £1 each towards my suffering, I could treat myself to a Koenigsegg Agera R at the end of all this. Not that I'm materialistic, obviously good health is far more important.....it does look good though!!
Just a brief update on the side effects at the start of cycle 2. I've already noticed a repeat of cycle 1, with my sleep pattern broken up due to the steriods and my gastric reflux kicking off again. If it remains aligned to cycle 1, both should improve over the next few days. I still remain aware of the peripheral neuropathy, but so far so good.
Monday 2 July 2012
From Goodwood to A&E
Well, that was an eventful weekend, from the highs of
Goodwood Festival of Speed on Saturday, to the lows of A&E on Sunday
morning.
So, first the good. My brother was over from Sweden for the weekend and had booked some tickets for Goodwood. We’d decided to head off at 06:30 (whose crazy idea was that?) to avoid the queues, a strategy that paid off, as we were wondering around the Formula 1 paddock by 08:30. We had a superb day trying to decide what supercar to buy……well, at least a cheap plastic model in the merchandise shop! We got to see the Chris Evans Famous Seven Ferrari collection, a far more impressive set of vehicles than Patrick Hoban’s shagged out 13 year old Subaru Impreza and 125cc Suzuki scooter….err….collection. Clearly my career in engineering has not been quite as financially rewarding!!
Having decided that Saturday evening in A&E probably wouldn’t be a pile of laughs, I waited until Sunday morning to go up. The fast track card worked its magic and I was quickly taken through to an isolation room to see a doctor. Having taken my blood, I was put on an IV of antibiotics as a precaution, just in case the blood results showed that I had an infection. Fortunately, the results were good, including a normal white blood cell count that indicated no signs of infection, so after three hours I was let out early for good behaviour!
I’ll take the negative news when it comes, but I also need to be happy with good news, so let me quote you from the letter I’ve just been copied in to from my consultant to my GP. ‘Most importantly, his plasmacytoma has decreased in size and feels much softer compared to that at diagnosis. This suggests an excellent response to his chemotherapy’.
I’ll take that one!!
So, first the good. My brother was over from Sweden for the weekend and had booked some tickets for Goodwood. We’d decided to head off at 06:30 (whose crazy idea was that?) to avoid the queues, a strategy that paid off, as we were wondering around the Formula 1 paddock by 08:30. We had a superb day trying to decide what supercar to buy……well, at least a cheap plastic model in the merchandise shop! We got to see the Chris Evans Famous Seven Ferrari collection, a far more impressive set of vehicles than Patrick Hoban’s shagged out 13 year old Subaru Impreza and 125cc Suzuki scooter….err….collection. Clearly my career in engineering has not been quite as financially rewarding!!
Marcus joined us with a friend of his, and neither could
contain their excitement at actually touching a Bugatti Veyron Grand Sport.
‘No, Daddy won’t be buying you one of those for 1.5 million pounds, when
there’s a perfectly good Subaru that could be yours if you play your cards
right when you turn 18!! The place was awash with Ferraris, Lamborghinis,
Lotus’, even a Koenigsegg Agera R for our Swedish contingent. Highlight of the
day must be watching Jenson Button having a ‘play’ with his McLaren F1 on the
track, and pretty much burning through one set of tyres during the first half
mile of the hill climb. Not good for the environment, but great entertainment!
So that was the good, now for the bad and the ugly. On
Friday evening I’d noticed that my left eyelid was looking a little red and by
Saturday morning it had started to swell up more noticeably. Normally, I wouldn’t
have worried about it, but during the chemotherapy my resistance to infection
is lower, and an infection is something they’d need to treat immediately, before
continuing with the chemotherapy. I spoke to my consultant whilst I
was down at Goodwood, and he advised that I should go to casualty. Having decided that Saturday evening in A&E probably wouldn’t be a pile of laughs, I waited until Sunday morning to go up. The fast track card worked its magic and I was quickly taken through to an isolation room to see a doctor. Having taken my blood, I was put on an IV of antibiotics as a precaution, just in case the blood results showed that I had an infection. Fortunately, the results were good, including a normal white blood cell count that indicated no signs of infection, so after three hours I was let out early for good behaviour!
So that was my Sunday morning, not the best way to spend it,
but at the same time, I really appreciated the speed and manner in which the medical
team in A&E dealt with me. Probably not the last time I’m up there, but we
will deal with each situation as and when it comes along.
Little word of advice and a safety tip for you all....don’t go cycling before 10:00am
on a Sunday morning! When I arrived in A&E there were already two lycra
clad cyclists with various parts of their face padded up and bleeding, to be rapidly
joined by a young lady cyclist who’d clearly decided to have a go at ploughing
the road with her forehead. You’ve been warned!
So, that was my weekend, eventful, but overall I’d say a
good one. Other than my eye, it was
fantastic to see my brother again and a fun ending to a really good ‘rest’ week
for me.
So, how am I feeling now? Well, having just returned from my
first injection of cycle 2, I’m on a high…..and no, that’s not just because of
the steroids! I’ll take the negative news when it comes, but I also need to be happy with good news, so let me quote you from the letter I’ve just been copied in to from my consultant to my GP. ‘Most importantly, his plasmacytoma has decreased in size and feels much softer compared to that at diagnosis. This suggests an excellent response to his chemotherapy’.
I’ll take that one!!
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